Long Days and Long Thoughts

Oh hello there world, I know its been a bit since my last post.  Honestly, I have thoughts and ideas every day that I want to share, but I don’t have the easiest time getting them out of my head.

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Here is my latest health update , for those keeping score, we are at a total of 10 doctors and yet I still do not have an actual diagnosis.  However, the current medication I am on, the Actemra injections 1x a week , seem to be actually working (knock on wood).  The Saxenda injections on the other hand, not working. All It seems to be doing is giving me bruises.  My left knee is still giving me problems, it sucks.  I have been waiting so long to feel good and its like , hang on a sec, we can’t possibly allow you to FULLY feel good. Ugh. Double ugh with cheese.  Mayor of Ugh City.

On a positive note, next Wednesday I start my journey with weight loss surgery.  To be honest, I feel like this is a last resort, but I also feel like a complete and utter failure.  I failed myself with bad decisions and bad choices. The sad part is, I really just realized this.  I wasted years of my life and I just hope its not too late to get my life back.  Then again, its been so long, I don’t even know what that would mean. I don’t even know what this life I long for is.

How terrible is that? Spending years wanting something and never making it materialize.  Story of my life.  When you break it down , I just want to be happy.  I have spent my entire life in search of happiness.  Pure happiness.  They did not call me Morbid Megan when I was a teenager for nothing .  Now I am Morbidly Obese Megan.

I want to be happy and content. Instead I am restless and depressed.  In the past three years, My life has become my illness.  Some days are not so bad, and some days are unbearable, and most days, I just deal with the pain.  Stairs though – motherfucking stairs are the devil.  My knee and stairs do not mix, never mind the fact that I am a Fatty McButterpants.

I hate the way I am . I hate the fact that my twisted sense of self brought me to this.  I hate the fact that my body is failing me and it needs help, medically and mentally.

Now I know my mother had so much more shit to deal with  and I cannot even come close to the turmoil that she had to endure on a daily basis, but I do know that I need to do everything in my power to be as healthy as I can so that I will be here past 61years old.   I truly do not know how she did it, but I am so grateful she did what she could to be with us as long as she was.

My story is far from over.  I need to live my best life possible ,  I say ” Just Keep Swimming ” to you all, but I am barely staying afloat myself.

Since my mothers passing, I have been searching for a way to honor her.  I have a clearer mindset as of late and I think Mum would just want me to keep being me, despite the obstacles and shit that gets tossed my way on the daily.

My mother took on every day with joy in her heart.  She faced every shot of medical bullshit dealt to her and made joke about it.  She found joy everywhere.

That’s what I need to do and Christ, it is harder than it seems.

I make jokes about my weight as a coping mechanism, but Mum, she made jokes about her situation for us I think more than her self.  And it helped, a lot.  She kept believing for us.  I used to think it was for her own sake, and maybe at the end it was, but it was a completely selfless act to help us cope I think.  From her “luxurious suite “at the Brigham and Womens hospital, to her crazy impressions, or just the excitement over a ham sandwich made by my dad instead of hospital food, she found the light through the dark.

That is my  mission. Find the light and be happy.  Doesn’t seem so hard, but will probably be the fight of my life.

Don’t stop believing and Just Keep Swimming Everyone!

I would love to read how you find the good within the bad and the light through the darkness, please share with us!

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Yes, I need to take a Nap

You read that right, I am a 37 year old mom of 3 who needs to take naps.  So damn what?!  As I am sure that anyone with chronic pain issues will understand the utter exhaustion that grips a hold of you every day .  While I am not experiencing the pain I have been as of late, the exhaustion never goes away.

I was recently outfitted with a CPAP machine.  I have “Severe Obstrusive Sleep Apnea”.  I went into it imagining myself like Darth Vader with my mask .

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Instead, I am more like Dark Helmet.  If you have seen Spaceballs, you know what I am talking about, and you have a wonderful sense of humor!  Anyways, my point being, my hope was that when I got the mask I would have all this energy and be full of life since I was sleeping better.  And yeah, no, not quite. Don’t get me wrong, it is definitely helping me.  My first follow up with the sleep doctor showed that I went from 66 times an hour not breathing to 1.2!  Pretty impressive… but still the exhaustion remains.

Just another symptom of Meganitis.

So yes, when I need to take a nap , I NEED to take a nap.

It is my hope that my exhaustion will get better.  But for now, I am a sleepy head.

I have to learn to listen to my body .

Easier said than done.

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Surprised on a Sunday

Today started like any other day. Woke up , sore as hell.  Exhausted even though I went to bed early.  Hubs got me a coffee, which was wonderful.

I had the thought that I wanted to go see Mum today . I haven’t been to see her in a while, which I feel terrible about. So I figured ,its warmer today than it has been, so today is the day to take a ride over to the cemetery.  I did some tidying up and asked Maddie if she wanted to go for a ride with me.

I called my dad to see if he would be around, figuring that I would stop by to see him after we stopped over to see Mum.  He told me he was on his way to Salisbury to look for some snowy owls.  You see, my parents have been birders my whole life.  When we were kids we would all reluctantly be packed into the car to go look for birds.  My parents , bribed us in their own way.  To keep us interested, different birds were worth different amounts of money.  Hawks got you $.25, Owls were $.50 and eagles, well eagles were $1.00!!  I got blessed with really good eyesight.  While,my parents and sisters have all had to wear glasses, my vision is still very good.  In fact, I acquired the nickname ” Eagle Eyes” when I was a kid.

Maddie loves animals, loves owls .  We keep talking about how Papa will take her to find some owls.  So,my dad suggested that we meet him to go see if we could see some owls or anything else we could see.  We are on our way and he calls me to say he has found a snowy owl.  Not sure if it will be there when we arrive, but we are going to try .  Maddie and I drive over to the Salisbury reservation and meet my dad.  We pull up and I can see his telescope all set up next to his car, facing the marsh.

He tells us where the owl is , its pretty far out, but he tells me where to look, and I can see the little white spot without the binoculars or telescope. I look with the binoculars and there he is, a snowy owl sitting on top of a wooden structure in the marsh.  I show Maddie where to look and it takes a little bit, but finally she sees her first Snowy Owl. The look on her face was so precious. It was exciting for me too, when I was a kid, I had only seen 1 snowy owl.

Its low tide and we decide to check out the seals.  The seals are always on these rocks in the mouth of the river right before it goes out to the ocean.  You can usually catch them lying around with their big fat bellies . Excited due to low tide and the fact we have not only binoculars , but the telescope, its going to be awesome to see all the seals.

The seals were my favorite part of the birding trips when I was a kid.  I wanted to be a marine biologist . I wanted to be the person swimming with the killer whales at SeaWorld.  I gave up that dream a long time ago, but I was horrified to learn of the gruesome conditions the whales were subjected to at SeaWorld. Check out the Blackfish documentary if you don’t know what I am referring to .  However, my boys have reminded me that I could still be a marine biologist , I could still go back to school.

We head over to see the seals, and what the hell -there are NO fricken seals!!!  Never had I gone in the winter to see the seals and there has been none. It was such a let down.  Honestly, it was very strange.

We then traveled over to the Parker River Refuge on Plum Island to see if we might be able to see some more birds.    One of the tell tale signs of something to see is when you see a bunch of cars and they are not in a parking lot.  Sometimes they are lined up on the side of the road or parked in a weird way.  We find one of these spots.  We pull up and ask a man with binoculars if there is something to see.  He says there are 2 snowy owls.  One on a post near us and one on an Osprey post further away.  The closer one was pretty easy to see .  Maddie was able to see it.

 

Maddie checking out the owl

Maddie checking out the owl

We then went to see the other owl we were told about and lo and behold, sitting atop of the Osprey post was the owl.  It was pretty cool.  We decide to drive to the end of the island and see if there is anything else.  My dad spys a little white spot in the marsh, I take a look and to me it looks a blob of snow.Dad takes a look and says yup its an owl, I can see it eyes. I couldn’t.  But when it started to fly that kinda sealed the deal that it was an owl, lol.

We saw a total of 4 Snowy Owls today.  It was really special for me and I know it was for Maddie.   After we left Salisbury we stopped at Dunkins before heading to Plum Island.  While waiting, my dad turned and said to me ” you said you wanted to see Mum today, and you did”  I hadn’t looked at it like that but he is totally right.  My whole life looking for birds, I have only ever seen 1 Snowy Owl, and today we see 4.  Call it what you want, but I think it was a sign from her. A really great surprise today .

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The Last First Thanksgiving

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We are on the cusp of the Holidays.

I am dreading this. How do I do the holidays without my mom? I know , I know, people lose people every second of every day, I am no different. I have lost before. It royally sucked when my sweet Gram passed in 2015.  And that year the Holidays were hard, but how do I do this?

For God’s sake, I can’t even write about how I am even going to begin to deal with this and I need to figure it out asap.  I just don’t know.

My daughter and I watch the Voice every week.  Our favorite is Janice Freeman, if you have watched it this season – you need to discover the absolute powerhouse that is Janice Freeman.  That being said, Janice was last to perform last night, well after my daughters bed time.  Right before Janice was about to come on, my daughter walks out of her room in tears, clutching her bunny she made with Nana, crying about how much she misses Nana.  Breaks my heart every time.  I kinda think it was Mum this time making sure she got to see the person she wanted.  I know its a stretch, but hey,I will cling onto anything I can , lol.

I am terrible at this. I really am . I need to be the one there for my kids when they are upset, especially when it is about Nana, and instead I am joining in the cry . Or crying everyday.  Like, when does this get better? When does the pain subside? I want to make my mom proud .  I feel like I was such a let down in her life.

I gotta find my way in this world and I don’t know how to take that first step.

I love writing this blog, It is such a release for me.  I think its time for a revamp, hopefully in the coming year, I can give it a fresh makeover.

Hope you will stay along for the swim.

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Faking It on a Wednesday

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I feel like Kurt is a good way to express myself. I am a huge Nirvana fan .

I feel like every day I am faking it.

Faking that I feel good.

Faking that I can handle this.

Faking that I am not brokenhearted.

I am trying to suck it up and deal with my daily pains.  I have moments where all i want to do is go to bed. I have moments where I feel fine. I have moments where I want to remove my legs and hang them on the wall. There is nothing I can do. Changing meds hasn’t helped . There is no cure for the fibro and if it is RA ( or a variant of it ) , there is no cure for that either.  Its just one of those things that people deal with I guess.

To be in pain on the outside hurts and sometimes it feels better. But to be hurting on the inside is a whole other ball game. I would take 1000 times the pain on the outside to alleviate this pain in my heart.

I have hurt before, for years I have been in a depression I guess in the clinical sense of the word. I Could not see the light. I feel like the light right now is hiding behind the shadows.  I know this is not how my mother would want me to feel .  I know she would say something crazy or something comforting or both. She had that way about her.

The reality is I miss my mother something fierce.  I miss hearing her voice , I miss her hugs, I miss just knowing she is here.  My mom was my person. My person I call when I am happy, when I am sad, when I have good news, when I have bad news , Mum was my person who could talk me off the ledge and make me feel better.

So, each year for the past 4-5 years I have been taking my son to the comicon in Rhode Island. Today they announced that Cary Elwes would be attending.  My most favorite movie of all time is The Princess Bride.  So, of course, who do I call to fangirl too?  I can hear her going ” oh how cool is that ?!” Not that my dad didn’t have pretty much the same reaction, but its not the same.

I am trying to figure out my way in this world and how to best honor my mother. I’m at a loss.

I need to get myself together, and get back on track. Just trying to figure myself out.

Gotta keep swimming

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Trying Something Different

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Hello Big World! I know , I know, its been months.  It’s not  you, its me, lol.  So, if I’m being honest, I have been a lump.  I am dealing with chronic illness ( fibro and still undiagnosed “Meganitis ” )  and all the joys ( NOT ) that go along with it and basically just trying to stay afloat in this crazy world.  Long story short, I am in pain everyday.  And fatigued. Good Lord, the exhaustion !  I wish I could find a way to combat it.

So, I have been wallowing in this pit of dispair and honestly , its been 2 years I have been down , if we are counting .   I have let it hold me back and control me and I need to break free . I have read several times that exercising , while it will hurt, in the long run , I will feel better. I think I owe it to myself to explore these options.

Nothing in life would make me happier than returning to Coach Jane and Crossroads .  Unfortunately that is not in the cards right now, but I am not writing it off down the road a ways.  I need something I can do when I have energy, which means working out at home.  I need need something low impact while my body adjusts .

So, I have decided to try something new to see if it helps me. I could be completly wrong and this could blow up in my face, but I am going to give it a go. I am currently on Gabapentin for my issues and let me tell you , I thought I was nuts when I had gained 40 lbs, but it turns out , lots of folks gain weight with Gabapentin. I need a way to combat it, cause honestly , I am less sore when I take my meds and really don’t want to change that up right now.

I joined some Fibro support groups to see if I could relate to some folks and get just some general info.  Its a real great forum .  Here and there folks would post about if they were working out and the thing that came up more and more was Yoga and Piyo . Piyo is a Beachbody program.  After a lot of research and speaking to people, I decided to give Piyo and the Beachbody programs a try. I am a bit nervous since even when I was working out, yoga was not something I was into, but I kinda need this is going to be my wheelhouse for a while.

I plan on diving in tomorrow .  I gotta get a yoga mat.  I will check in and let you all know what I think .

Hopefully, I can find the balance and shake this funk.

Thanks for coming on the swim folks!

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Baby Steps

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Good Evening Everyone !

It is with extreme happiness that I can tell you I finally did it = got my tookus back to the gym!

I got my new medication after my rhumetologist  stepped in  .  It arrived on Friday  and I started the injections that night.

I am still nauseaous, but it is not as much as it was before. I am hopeful that after a few weeks, it will decrease significantly .  The best part is that my doctor okay me getting back to the gym as long as I ” listen to my body “. So, I contacted my coach Jane at       Crossroads Strength and Conditioning to see if it would be okay if I came back with my issues.   And she said of course! Definitly knew that I was going to basically do everything modified but I had to get moving.  ANYTHING is better than nothing, right?!

So, started new meds.

Ready to go back to the gym.

And oh yeah, decided to jump on the Gluten Free train.  Let me explain : I had read multiple articles regarding Gluten and inflammation , so I figure, what the heck, I’ll give it a shot. So far I am on day 3.  Honestly, this is 2 days better than I thought I was going to do.  I’m not sure how long that I can keep it going, but if it helps, I am going to give it a whirl.

I got back into the gym and the warm up itself was already killing me , lol.  Onto the workout : here is my severly modified version .  No laughing out loud, 🙂

4 rounds

30 wall throws ( like the baby sister of the wall ball ) just tossed the ball at the wall

20 Step ups on the little box

10 DB snatches!!!! 15l bs —–> I LOVE SNATCHES! AND I COULD DO THESE NOT MODIFIED!!!

5 Push ups – these I did standing up leaning into the bar on the rack.  Truth be told, I totally could feel this in my arms and chest way more than any pushups I had done before.

I completed all 4 rounds – total victory ! And under 20 minutes!

This was complete baby steps.  And this will be for quite some time, I am sure.  This time around , I need to do the baby steps.  I used to get really frustrated when I thought of how far I had come or how much I could lift or do, but this time, I can’t be like that .  It’s wasted energy.  I am just going to roll with it and see how it goes.

Its been a productive week so far.  Hoping to get back in the gym tomorrow. Starting slow with 2 times a week.

Gotta Keep Swimming !!!!

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Happy New Year!

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Happy New Year Everyone!

I’ll admit, I have been quite miserable the last few months.  Throwing a personal pity party for myself.  I’m sore, I’m cranky, my appetite is horrendous, medication makes me sick….I have been just ugh.

Welp, I am really going to try and change this around.

I need to honestly, or at least dedicate myself to dealing with this chronic pain better.

For those keeping track, we are on 2 years of my body telling me something is wrong and no doctors being able to figure it out.

Current symptoms include: all over body soreness, painful arm pits ( yes arm pits) , side pain ,chest pain,  my  ” necklace of pain” ( my throat and collar bone area ) , crazy night sweats, fire skin and crazy appetite.

First off, gotta get my meds under control . The metheltrexate i am on is really helping my knees and the arthritis that developed in them , however the medication makes me soooooo nauseous every day ! like every day! i wake up and just want to barf, but i never do, its awful. I just sit and wait for it to pass.  Then there is the Prednisone…. ugh, why do they make it so it helps you feel better but you become a ravenous pig?

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Anyone else have that issue with metheltrexate?  Or Prednisone?

So, my doctors solution to that was changing it to an injectable one, however since i have no “official ” diagnosis and Meganitis is not a recognized disease anywhere, my insurance rejected it.

Ugh. So i was going back and forth with my doctor in messages and getting no where, so I have an appt this Weds. Hopefully I can get on the right path here.

I also am DYING to work out. To say my weight has increased would be a complete understatement, I don’t even recognize myself. I was going to get back at the gym, but then I needed another PET scan and my doctor told me to hold off starting back up .

But, now I NEED to do something. So , I am hoping I can get the ok to start back up , even if its small, and hoping he can do something to offset the appetite.

I never realized just how many people out there are dealing with chronic pain, be it from fibromyalgia, RA or any type of Arthritis , MS, cancers, its really nuts how many people are in the world suffering right now. It’s incredible .

We all find our way to get through the day.  One thing that I have found to help with my daily routine is Plexus. It has been beyond incredible.

They only have a small amount of products, but they have been awesome.  The Plexus Slim, The Ease , The Nerve ,  they are all so helpful to me daily. My pain has yet to be eliminated but, it definitely takes the edge off.

Honestly, I catch a lot of shit from people for promoting Plexus, but if they had any idea how much it has truly truly helped me, they would understand. Thats why I share it all the time, if there is someone out there like me ( based on my research there are thousands) that could benefit from these products, as a human , It is my job to share it.

 

Since I am hoping to be able to start doing some sort of exercise again, looking for feedback from the folks out there suffering from chronic pain. What do you do ? Or do you find that it is too difficult to do anything ? There has got to  be something I can do .

Here’s to making 2017 a great year!

Blessings and love to you all!

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Things have changed

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Things have changed drastically in my life since I started my journey.   When I started this, it was a fitness journey. Now my life has become the quest for diagnosis. Not exactly what I wanted out of my life, but this is currently where I am .

So, what does that mean for my blog?

It won’t be as much about weight loss , but rather more about my health issues and daily life. I have to imagine I am not the only one with ongoing medical issues and no diagnosis.

I hope I can share my stories and maybe see some too.

So this is where things currently are in my life medically :

After my disastrous ortho appointment where he basically pressed “repeat” on all the other things doctors have said to me, I went back to my Rheumetologist.  I gotta say, I do really like my Rhumetologist, Dr. Dellaripa.  He actually is very up front with me  and pays attention.  Out of all of the ones I have seen, I feel like it is just as frustrating to him that we cannot figure this out as it is to me.

Dr. Dellaripa wanted to do an MRI.  My knees were in excruciating pain. So , I was down for whatever. I go in for the MRI and the person at the desk asked how my veins were for the contrast.  I told her good, I ,had had  contrast several times before. They call me in.

I’m sitting on the table waiting for the IV.  And he starts to get me into position for the MRI. I questioned , wasn’t I supposed to have the contrast? He goes back and double checks the order, nope, not supposed to have it. We proceed with the MRI. He puts my knee in this boot type thing to keep it down. I thought I was going to scream. It was so painful not being able to move my knee at all, it being locked down in this thing was just horrible.  I was just about to hit the ” help ” button they gave me to stop if I needed to, when it was over. Thank God!

Fast Forward to the next day, Hospital calls me and apologizes profusely that they screwed up and I need to come back to have the MRI done again …..WITH CONTRAST!

To say I was upset and pissed is an understatement. This was complete bullshit.

It was so hard to walk after the first one, I am so glad I had my husband go with me. I was literally hanging on the railings in the hallways to help me walk. So, I was really not looking forward to this one.

This time, they gave me the contrast and it was not as long, thank goodness.

Results – I have arthritis in my knees apparently . It wasn’t there 6 months ago. Also still have enlarged lymph nodes everywhere. Even my knees. Who even knew you have lymph nodes in your knees?  And of course mine are messed up . Dr Dellaripa decided that we are going to treat me with Metheltrexate for the arthritis for the time being.  I had already been tested for Rhumetoid Arthritis and everything came back negative, but he knew I needed something. The plan was to start the meds and go back in a month.

It was definitely a rocky road starting the meds.  Took a few weeks to kick in, to the point where I am now  on a low dose of steroids. But it has been about  4 weeks and there has been a lot of improvement. My right knee is currently pain free. My left knee is still sore, but it is way better than it was .  I even did 5 flights of stairs last week – and survived.  Crazy, right?  Able to fully walk when done.  Don’t get me wrong , I was sore , but I was able to keep pace with everyone for the most part. A victory!

This brings us to last week.  Knees aside, I have not been feeling all that great.  My armpits have been killing me – big indication that I am in the middle of a flare up .  I have not felt any enlarged lymph nodes, but I guess this is their way of letting me know, they are still here.  So, doctor is sending me for another PET Scan , went for more blood work and now
I need to go see a Hematologist.

I flat out asked the dr if its possible that this is cancer and its a slow developing one or if its possible that it could turn into cancer.  His response was ” absolutely “.

Call it naive, call it frustrated, call it fed up , but I thought cancer was off the table.  I guess its on the table, I guess everything is on the table.Bone marrow test too is on the table.   Its like a viking table. Huge and ginormous and full of crap.

I’m looking at things differently than I did before. I am sick, no one knows how sick. And some days are better than others. But I can’t stop living my life.

So, I am not going to stress. I can’t.  I just gotta go day by day and enjoy things as I can .  I know some days will be better than others . And some days is better than no days. I’ll take what I can .

I have a busy week ahead.  Hoping for minimal to no flare ups.

Hoping everyone has a great week !

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A Week of Non Scale Victories!

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Last week was one of the best I have had in a while.  It seems like everything is falling into place.

Lots of Non – Scale victories to share!

1st – My pants are bigger! I have to keep pulling my pants up ! Silly , but it is so cool.  I swear its because of my Plexus Tri-plex . A big thing with Plexus is a healthy gut.  I have been taking the probiotic and biocleanse, as well as my Plexus slim pink drink.  I think its a combo of that and the fact that I am just not as hungry anymore. I am not ravenous. Which leads me to my 2nd victory…

2nd – I always finish my food – get every last bite – go in for seconds – always finish that last bite of my burrito.  Not anymore, I just can’t .  I have NO DESIRE to continue the face stuffing.  AND ITS FREAKING AWESOME!!!  I had trouble finishing chicken fingers and french fries this week.  Now, granted not the most healthy meal, but I have ordered a side of french fries before on top of the fries that come with the food. And I couldn’t even finish it!

3rd – I resisted a full piece of cheesecake at the Cheesecake Factory.  Yes, I can’t believe it either. I usually get a full piece for myself .  This time, I shared with my daughter and even then could not eat half.  THIS IS GINORMOUS FOR ME.

4th – I got into a pair of jeans I have not been able to get into for months.  And it didn’t require acrobatics to zip them up ! This my friends was such a great feeling.

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I also got back into the gym this week! Took it easy but I got in there and moved the best I could!

It was Weightlifting Wednesday.  We started with dead lifts. 3-3-3-3-3.  I warmed up with 85 lbs. I so badly want to beat my 215 lb dead lift, but I have to work back up to it, its gonna be a while.   😦

I started with 85lb as my warm up , then did 105 lb, 135 lb, 145 lb, 150 lb, 155 lb was my final.  Still have such a ways to go.  But I love them dead lifts, so I will keep at it!

Next up was supposed to be goblet squats, but given my knee situation, I did bench squats instead as part of the accessory work. I gotta say, the bending didn’t bother me nearly as bad as I thought it was going to . It was getting up off the ground that was the struggle.

Here is the accessory work :

3 rounds

5×8 bench squats

20 band walk – left and right

10 reverse lateral raises

30 sec dead bug hold

10 skull crushers

 

Like I said, the hardest part was getting up off the ground after the dead bug and the skull crushers.

Looking forward to what the next week will bring!

 

Any non – scale victories to share? I’d love to hear about them!

 

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